Share your story

My partner has Frontotemporal dementia, diagnosed December 2018, she has no insight as to her condition. She lost her jobs and driving licence, her world imploded and now is totally reliant on me as a 24/7 carer. As a rare form of dementia, we struggled locally for knowledgeable expertise until I came across the Rare Dementia Support team at UCL, October 2023, who were superb in pinpointing the requisite support within the local authority. Once in the system and knowing which bodies to approach, matters have progressed positively, but requires persistence and resilience.

Hi. I am writing this after getting my husband washed, dressed and into bed. He’s still able to shave himself and sometimes gets himself undressed and washed but this is getting more infrequent. Both mornings and evenings I have to help him . It’s very demanding as often he doesn’t want to get up. He’s a strong man , so I find it physically demanding . Unfortunately what makes the mornings particularly hard is that he’s wet himself and he’s soaked up to his armpits. He wears two pairs of incontinence pads and pants but despite being upgraded to more absorbent ones , still let the urine through. Every morning I strip the bed of its sheets (which are waterproof to protect the mattress) and put sodden pyjamas etc into washing machine and then into tumble drier. I am worried about our electricity bill but there’s no alternative. I’ve been allocated half an hour of support at 11 am every day. There’s no earlier slot so am in a dilemma about whether to accept this as no way can I leave him for hours in wet clothes. The Social Worker says to accept it and then an earlier time may come up.
I’ve paid for a stairlift to be installed and am waiting for quote to take bath out and put walk in shower in. There’s no funding available as our income is just over the threshold.
I am fortunate as my husband’s dementia has not made him aggressive but his behaviour is quite challenging as he’s losing his inhibitions. I am trying to retain a sense of humour but I am exhausted!
We’ve had a very happy marriage as we’ve enjoyed travelling and visiting other countries especially since we retired but I now dread staying away for a night as I’ve got to pack so much extra clothes and bedding.
We’ve always been able to discuss things we’ve seen or read as both of us enjoy reading but now there’s no conversation at all apart from the occasional word or two from him. Fortunately I quite enjoy driving but I may as well be in car on my own and on long journeys I put the radio in for company. He’s got the fronto temporal mode dementia which particularly affects speech and communication. I often feel lonely even though he’s there.
I know it’s a cliche to say you’ve ‘lost’ the person you once knew and loved but it’s true. The worst thing of all is when he totally ignores what I am saying and does exactly what he wants to do never mind the potential consequences. We live on a farm and he still wants to do the things he used to which can be potentially dangerous so this is an added worry.
I am very fortunate in having a lovely family who are doing their best to be supportive although our two boys live at a distance but our daughter lives near but has a demanding job plus two young children. I can’t imagine how people cope without family and friends.
To sum up what I worry about most is my patience running out and exhaustion making me physically and mentally unwell. I want my husband of 53 years to stay at home but trying to get daily support so far has been a nightmare. It’s obvious that the Social Services, Occupational therapists and District Nurses are underfunded and short staffed but are doing their best to help. With an ageing population unless a major overhaul of support and funding takes place, I dread to think what the future holds.

My husband was diagnosed in 2014 he gradually got worse as time went on. I couldn't get him up and down the stairs. I eventually sold my house and moved into a downstairs flat. He moved in with me but he was a lot worse by then he had Lewy body and also Parkinsons. He didn't seem the same person he would go to toilet and would then fall. He was unable to stay At home during the final year and he went into a nursing home. The worst part was that he was unable to talk and he had to be fed with mushed up food. I couldn't let him tell me anything. I told him everything I could but I couldn't know if he wanted to tell me anything. He eventually died in March 2021 at the begining of the Shutdown. I wasn't allowed to see him for the last 2 weeks although I begged them to let me in.

Sadly, I got covid. My husband has had Alzheimers for 5 years now. he was fine, living with me at home climbing the stairs with hand railways and showering and dressing with help. a day with a streaming nose cleared my covid but sadly with Alzheimers he could not move. after the paramedics spent an hour with him, he was sent to Hospital where he lay in a corridor for 2 days. he could not urinate lying down so was fitted with a catheter. This is now permanent and he is in a care home(luckily a good one with very caring staff.). This is costing £2000 a week.
we have both had all our covid jabs and I would like to point out that I had no idea that covid would have such a devastating effect on someone with alzheimers. From being fairly mobile, he can only walk occasionally with his Frame and a wheelchair behind him. He is a quiet, kind polite and gentle man. he always thanks the staff for what they do. basically I am devastated by the affect covid has had on him. we spent a full day in Hospital to see if he could manage without the catheter but to no avail This is so sad. he is 90 and I am 88 . our life together has finished. the care home is near so I visit every day and he never wants me to leave.

My Dear husband showed signs of dementia but ge tting a diagnosis pr over difficult and lengthy. He w as finally diagnosed in 2021. The pandemic didn't help and because of the lockdown we became very isolated. Trying to get t he lp and advice provemd difficult. Tow Ards the end of lock down n I realised I needed some practical help to look after him. One weekend I reached crisis point and in desperation I rang 111. They were so helpful. They arranged for the equipment I needed and for a Nurse & Occupational Therapist to come in on the Sunday morning.. The help I got for the next week really helped put me back on my feet.. During that week they located a Trained Carer to come in twice a day to help me with my husband. She was a real TREASURE.

After we received the devastating diagnosis that, my dear mother had vascular dementia & alzheimers, in 2019, just before covid/lockdowns, we were literally left on our own, with no support. My family live abroad, so I was my mum's sole carer. Tried with carers visiting but, unfortunately my mum didn't receive the care she should have got.
After 3 1/2 years of being my mum's sole carer, I was burnt out, exhausted and stressed, I had no choice but, to place my mum in a care home.
The on-going loss you witness, in seeing your loved one change/deteriorate so dramatically is horrendous.
My mum is very intelligent and had a 'photographic memory', she was a great communicator, she loved travelling, and had a very inquisitive mind. Every day she would do multiple crossword puzzles, she was an avid reader and had many books, sadly, she is unable to read now. My mum is, a loving, kind and caring person, always giving to others. She was a single parent, & worked very hard all her life, providing great care for others, she was very professional passionate, and loved her work as a (nurse, mid-wife, sister and nursing lecturer).
Having to deal with multiple agencies and the repetition of answering the same questions, and duplicate form filling all added to my stress and anxiety. Changes need to be made, It would greatly help if, Social services/Social care/Mental health/Local authorities/ other agencies/departments ALL communicated with one another, in One place, under One Umbrella', it was extremely difficult to NAVIGATE through all of this, whilst dealing with the devastating and seismic changes 'dementia/alzheimers, brought into our lives.
I am so thankful & grateful to our dear friend David, and all the lovely people along this journey, who were kind & helped us in times of crisis.
*The Government MUST make dementia/alzheimers a Priority & STOP 'brushing it under the carpet & kicking the can'. They desperately need to FIX the very broken Social Care System, provide much more funding for social care provision and care home costs, which are extremely high, and provide increased financial support for unpaid carers. Carers need specific related training in Dementia, fair wage increases.

My father spent the last five years of his life grappling with, and then slowly succumbing to, dementia, and it was horrible to see him reduced to the state that he was in at the end. He had been a brilliant biological research scientist during his working life, of global repute, and it was a terrible tragedy to have to watch him become a pale shadow of the person he had been. He finally found his release in March 2019, almost five years to the day that my mother passed over- they are together in Heaven now, but I know that as someone who worked in the field of neurology for much of his life he would be fascinated by the research work that is being done to find a cure for Alzheimers, and would fully support the work of the Alzheimer's Society.